I have read that less than 20% of oral cancer patients with radiation to the oral cavity will develop ORN. This figure was in a general article about head and neck cancer with no indication of scientific study to back the figure.

In my own experience I have tried to identify factors that contributed to my ORN in addition to the direct shot of XRT through the mandible. 1.I did not have any blocks or masking for my multiple fillings and several crowns during my 60 Gy. 2.I used bisphosphonates (Fosamax) to treat osteoporosis for about 10 years, and it is known that bisphosphonates can contribute to osteonecrosis. Osteoporosis was diagnosed in my early 50's. My SCC was diagnosed when I was 57. In retrospect, given my SCC dx, there are changes I would have made: 1.I would not have taken bisphosphonates. My PCP and my MO both encouraged continued use after my SCC dx. I made the decision to discontinue Fosamax about 6 years ago. By the way, I have reduced the osteoporosis dx to osteopenia through diet, exercise, natural supplements of calcium/D. 2.I would have thoroughly researched the radiation plan and have addressed blocks, etc. for radiation scatter. 3.After radiation I would have located a dentist familiar with oral cancer and ORN and questioned each panoramic X-ray re signs of ORN.

donfoo and others who have addressed the lack of medical resources for patients with long term radiation effects: My cynical take is "Follow the money." I talk with my current medical team about the lack of professionals in this "field" and encourage other patients to do the same. Unfortunately, I don't anticipate much change. Education for patients is crucial, and we can do that through our participation in SPOHNC, the Oral Cancer Foundation, other patient-active organizations.